Hi,
Last January I underwent emergency surgery to defunction the lower segment of my colon and fit a loop colostomy. This was 6 weeks after the delivery of my second son. I was desparately ill with Crohn's while pregnant but nothing was done; I lost weight at a rate of 1kg per week for the last 4 weeks of pregnancy and had my baby delivered 4 weeks early by c-section. 10 days prior to my emergency op I saw the specialist IBD nurse in clinic who told me that, despite my bowels not opening for nearly 4 months (I have consitpating Crohn's), constant bleeding, pain, horrendous pain, hot flushes and night sweats, there was nothing wrong with me.
At the time of surgery my CRP was 365, :yfaint: I think I had peritinitis and I was in heart faliure. The surgeon said that it was the worse case he'd ever seen and it was so diseased that it was dangerous to try to remove it, as I would have bled to death. The plan was to defuntion the worst part, give the disease time to calm down and then remove the damaged parts of bowel, leaving a permanent stoma. I was put under the care of the top surgeon and have been waiting for surgery to remove the damaged bowel ever since.
I was initially put on prednisolone, then humira which I was on until Christmas when I was diagnosed with a really bad step/straplococcus infection. I have been on nothing but paracetomol since Christmas, and only allowed tramadol in the last week.
I complained to the hospital about my lack of care during pregnancy, and from doing so was horrified to discover that 'nobody believed I was ill', that a peri-anal fistula had formed during the pregnancy which was tracking towards my reproductive system, and that I have a stricture and disease at the termil-ileum.
My condition stabilised over the summer but started to deteriorate in late October. In November my surgeon said the need for surgery would be symptom-led. A colonoscopy was done in early January which showed active disease, old disease and polyps. I was told it would be too painful to bear and therefore I must have a GA. However due to my strep sinus infection I was given a spinal block. I had to wait until the 5th of March to get the results, although I've not actually been told the findings, I only know about the polyps because I saw them! I was told that all of the de-functioned bowel must be removed (including tail-end) and the termil-ileum but they weren't sure how extensive the disease was and it was likely that they would take out the whole colon. He said that, because of the fistula it was unlikely that the tail end would heal properly and would cause me ongoing problems and that I would just have to wear a pad. I could expect to stay in hospital for at least two weeks as it is a big op and I am a complicated case.
I have been suffering with persistent bowel infections in the defunctioned bowel since February, passing pus, blood and mucus. I have been housebound because of this and pain since before Christmas. I haven't been able to take my 5 year old son to or from school for months now. The pain in my pelvis is constant and unbearable. I have horrendous mouth ulcers which are like big balls in my mouth, and ulcers on the stoma. I can't bear the night sweats because I was so ill with them last year. It reduces me to tears and I am struggling to cope.
Over the last 4 weeks I've had large and extremely painful lumps appearing around my tail end, in my buttocks and underneath. I email my GI consultant symptom updates and when I saw him in clinic earlier this month he said that although I've had abnormal blood results (though he didn't specify what), he wasn't too concerned and I didn't look ill and shouldn't be taking pain killers. He said he'd request an urgent MRI scan, but his request was likely to be turned down (?!)
Thankfully my GP has been sympathetic and I am on slow release tramadol, with regular tramadol top ups. I was given a date of May 22nd for the surgery, but found out from the x-ray department (who were arranging a PICC line to be put in for the surgery) that it has been postponed to the 29th of May. I rang my surgeon's secretary to confirm this and was told that I do not have cancer, am therefore not important, and must wait my turn. I've been waiting for 14 months. My GP said this morning that my condition is critical and that she understood I was a priority case, however she hasn't contacted either of my consultants to express her concerns. She has said I need to see a new GI after the surgery.
I don't know what to do, is it just that I'm not coping well and I'm not that ill, or am I being ignored by my consultants? I feel like I'm banging my head against a brick wall, nobody's listening to me and I don't want to be on the verge of death like I was last year. I'm 29 and I have a family to look after and I feel like I'm losing my mind.
Any advice would be greatly appreciated,
Angela x
Last January I underwent emergency surgery to defunction the lower segment of my colon and fit a loop colostomy. This was 6 weeks after the delivery of my second son. I was desparately ill with Crohn's while pregnant but nothing was done; I lost weight at a rate of 1kg per week for the last 4 weeks of pregnancy and had my baby delivered 4 weeks early by c-section. 10 days prior to my emergency op I saw the specialist IBD nurse in clinic who told me that, despite my bowels not opening for nearly 4 months (I have consitpating Crohn's), constant bleeding, pain, horrendous pain, hot flushes and night sweats, there was nothing wrong with me.
At the time of surgery my CRP was 365, :yfaint: I think I had peritinitis and I was in heart faliure. The surgeon said that it was the worse case he'd ever seen and it was so diseased that it was dangerous to try to remove it, as I would have bled to death. The plan was to defuntion the worst part, give the disease time to calm down and then remove the damaged parts of bowel, leaving a permanent stoma. I was put under the care of the top surgeon and have been waiting for surgery to remove the damaged bowel ever since.
I was initially put on prednisolone, then humira which I was on until Christmas when I was diagnosed with a really bad step/straplococcus infection. I have been on nothing but paracetomol since Christmas, and only allowed tramadol in the last week.
I complained to the hospital about my lack of care during pregnancy, and from doing so was horrified to discover that 'nobody believed I was ill', that a peri-anal fistula had formed during the pregnancy which was tracking towards my reproductive system, and that I have a stricture and disease at the termil-ileum.
My condition stabilised over the summer but started to deteriorate in late October. In November my surgeon said the need for surgery would be symptom-led. A colonoscopy was done in early January which showed active disease, old disease and polyps. I was told it would be too painful to bear and therefore I must have a GA. However due to my strep sinus infection I was given a spinal block. I had to wait until the 5th of March to get the results, although I've not actually been told the findings, I only know about the polyps because I saw them! I was told that all of the de-functioned bowel must be removed (including tail-end) and the termil-ileum but they weren't sure how extensive the disease was and it was likely that they would take out the whole colon. He said that, because of the fistula it was unlikely that the tail end would heal properly and would cause me ongoing problems and that I would just have to wear a pad. I could expect to stay in hospital for at least two weeks as it is a big op and I am a complicated case.
I have been suffering with persistent bowel infections in the defunctioned bowel since February, passing pus, blood and mucus. I have been housebound because of this and pain since before Christmas. I haven't been able to take my 5 year old son to or from school for months now. The pain in my pelvis is constant and unbearable. I have horrendous mouth ulcers which are like big balls in my mouth, and ulcers on the stoma. I can't bear the night sweats because I was so ill with them last year. It reduces me to tears and I am struggling to cope.
Over the last 4 weeks I've had large and extremely painful lumps appearing around my tail end, in my buttocks and underneath. I email my GI consultant symptom updates and when I saw him in clinic earlier this month he said that although I've had abnormal blood results (though he didn't specify what), he wasn't too concerned and I didn't look ill and shouldn't be taking pain killers. He said he'd request an urgent MRI scan, but his request was likely to be turned down (?!)
Thankfully my GP has been sympathetic and I am on slow release tramadol, with regular tramadol top ups. I was given a date of May 22nd for the surgery, but found out from the x-ray department (who were arranging a PICC line to be put in for the surgery) that it has been postponed to the 29th of May. I rang my surgeon's secretary to confirm this and was told that I do not have cancer, am therefore not important, and must wait my turn. I've been waiting for 14 months. My GP said this morning that my condition is critical and that she understood I was a priority case, however she hasn't contacted either of my consultants to express her concerns. She has said I need to see a new GI after the surgery.
I don't know what to do, is it just that I'm not coping well and I'm not that ill, or am I being ignored by my consultants? I feel like I'm banging my head against a brick wall, nobody's listening to me and I don't want to be on the verge of death like I was last year. I'm 29 and I have a family to look after and I feel like I'm losing my mind.
Any advice would be greatly appreciated,
Angela x